Advocacy's fight for common-sense patient protections

Over the last three years, NPF’s government relations and advocacy efforts have grown exponentially. We know that too many of you are frustrated by the challenges you face in managing your psoriatic disease. Our advocacy efforts have expanded to address the ever-increasing challenges to getting and remaining on a treatment appropriate for your disease.

These initiatives have included advocacy around legislative and regulatory programs and leadership on access-to-care campaigns with insurers, employers and other health care stakeholders. NPF has established programs at the state and federal level to guide NPF volunteers through each of these campaigns.

Because we recognize that the challenges of the U.S. health care system are not ours alone, we’ve been working with other nonprofits that represent those with chronic disease to enact policies that support improved health outcomes for all. Most important, we understand that our greatest strength lies in the ability to connect individuals living with psoriatic disease to the people who set policy and make laws.

A new online home for advocacy

Earlier this summer, NPF launched a newly refreshed advocacy and government relations site (psoriasis.org/advocacy). There, you will learn about what we do — including our work with federal and state legislators and the federal agencies that advance psoriatic disease research and drive our nation’s public health efforts.

You can read more about how we lead — by working in partnership with you, and under the guidance of more than 30 Medical Board experts — to bring your experiences before decision-makers who have the ability to change policy and improve access.

We’ve made it easy for you to get involved — including signing up for our alerts, communicating with your elected officials and following the progress of our regional advocacy action networks.

Recent victories and a look ahead

With your help, we have seen a number of amazing successes.

At the state level, NPF led coalitions that passed five access-to-care bills in the last year alone. Four step therapy bills, which provide exceptions to the protocols, were signed into law in New York, West Virginia, Iowa and Texas. In the District of Columbia, we successfully championed a bill limiting out-of-pocket costs for therapies this year. New laws protecting patients were ushered by NPF to success in Indiana, Illinois, California and Kansas during 2016. We want to make your state the next with these protections.

In a recent Advance update, we shared news of the first-ever patient-focused drug development meeting on psoriasis before the Food and Drug Administration, held in March 2016. As a result of the feedback given to the FDA on the challenges facing psoriasis patients, particularly children, the agency approved the first systemic therapy for pediatric psoriasis patients in fall 2016.

Finally, our efforts have also included initiatives to advise insurers and the groups that advise them on issues of concern to our community. In 2016, NPF briefed the Institute for Clinical and Economic Review, a nonprofit organization that evaluates medical tests, treatments and delivery systems, on the treatment of moderate to severe psoriasis. Following NPF’s input, ICER released a final report that found that all eight of the therapies it was reviewing were “of good value” and that insurers should consider “abolishing or limiting the use of step therapy” for these treatments.

Each of these initiatives has the ability to benefit thousands of individuals living with psoriasis and/or psoriatic arthritis. With your involvement, we will be able to benefit millions more. We invite you to get involved!

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.